I Sued and Suddenly I’m Self-Employed

The pandemic has been a time of tremendous change and upheaval for me.  As previously posted, I have CLL, which is a form of blood cancer that is incurable.  However, with treatment and monitoring I am expected to live at least 20 years since diagnosis (at 42), hopefully more.  New treatments are coming through all the time, two since I was diagnosed and one of which I am on now!  It’s unknown, so I’m assuming I will have a ‘normal’ lifespan and acting accordingly.

Before the pandemic, I had been working for a firm of solicitors as Legal Secretary for over 19 years, and had spent 10 of those years as a qualified Specialist Paralegal fee-earning for them with clients in Wills, Probate Administration, and Powers of Attorney.

meme by Dom because I complained one didn’t exist for my job.

Boom, pandemic.  I went into hibernation shielding on 15^th March 2020.  I have not been released yet; it will be two years of shielding soon and I’m thinking of a having a party of one.  Two if I let my husband attend.  Three with the cat.  I was due to start chemoimmunotherapy in that month, having already had bone biopsies and aspiration of bone marrow in January 2020.  It was delayed, and I eventually started treatment in June 2021.  I finish in June 2022.

Blood cancer, especially my kind which is chronic and incurable and means I have a very compromised immune system even when not in treatment and also means the vaccine has very reduced if any efficacy, means a very high risk of death from any covid infection.

There was legal protection whilst the furlough scheme was in effect.  However, my firm was being subsumed by another as the partners were retiring, and in April of 2021, when I was working 20+ hours per week from home, the firm switched.  From that point, I was excluded from being able to work.  I have not been to an office since.  I have not seen the work colleagues I spent so many years working closely with.  It was a small firm, only 8 of us.  I did not realise when I went into shielding that that would be the end of my working life in an office.

One case through ACAS later, which I won, and it is accepted by the DWP that I am no longer able to work outside the home safely.  No job interviews for me.  I am hampered by the pandemic and the disabilities I have, which whilst no employer will outwardly say so, puts me at the bottom of any prospective firm’s wish-list in the job market.

I have even been advised by HR to lie about my health to get in through the door, as if they’d never heard of probationary periods.  I spent six months of last year trying to be heard, only to have professionals talk over and around me and make decisions for me without any consultation at all.  I was completely open with them.  They were not.  I had a mini-stroke from the stress.  There is a reason I won the case.

So, I made a new year’s resolution.  I have many skills, I have a brain, I can work from home (as proven by the 11 months I did so successfully whilst on furlough), and furthermore there are a lot of people out there who do not want their blood relations to have rights over them and their estate when they die.  There are many people in non-legally recognised forms of relationships who need to have their chosen family covered in the event of their death or ill-health.

It feels a bit like a calling.  I know though that if the transfer to the new firm had worked then I would still be with them, working from home.  The security of a wage has always been extremely important to me.  It has taken a mini-stroke and therapy to get me to this point.

Now I could not be more excited about my new business.  All Inclusive Wills, named by my mum when I told my parents what I was going to do and who I intended to help first.  My options may be limited, but I am so excited about this one it doesn’t matter.

I know I have the relevant expertise. I have systems in place to ensure continuing professional development courses are accessed.  I have business cards, a website, precedent documents ready to go. I love the job of creating the legal documents and seeing the relaxation of my clients when they know their wishes are met and their loved ones safe.

image description: All Inclusive Wills for your chosen family, written in purple font over a turquoise background. There is a black-line image of two hands grasping to form a heart shape. Purple V shapes outline the image on top and bottom.

It launches on 6^th April 2022.  Watch this space!

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The Power of an Image

Image of a large mural painted on the side of a three-storey house, entitled “Riders of the Apocalypse”.  Artist is Brian Barnes, painted in 1984.  World leaders at the time, Margaret Thatcher, Mikhail Gorbachev, Ronald Reagan and Yuri Andropov are depicted riding on bombs flying from the left to the right of the image, which the dove of peace, the CND symbol and other images representing peace, environment and Greenpeace politics fly in from the right to the left to meet these bombs.  In the background is an image of planet earth on a deep blue backdrop.  At the bottom of the image is a green curved block line onto which are painted small pictures of people’s faces.

Brian Barnes, a Kent-based artist and mural painter, passed away on 28^th December 2021. For around 12 years I lived in Sanford Housing Coop, which features the final political mural that Mr Barnes created, “Riders of the Apocalypse”, in 1984*.  In this blog, I’m calling it ROTA.

This image brings forth such a mix of emotions I’m finding myself sitting here entranced by the power of a captured single moment in time igniting memories and emotions stored and filed away over many years.  12 years of ROTA being my lighthouse beacon of home, the marker by which I directed visitors to know they had arrived, a reflection of my principles and knowledge that my neighbours, my community, was similar in how we wished to see people housed and cared for.

A still picture can evoke myriad emotions and whisk you to a long-forgotten place or person.  It is time-travel in two dimensions.

I became a bit of a joke (kindly meant and true) for always taking photographs everywhere I went.  I have thousands dating from when I started with a trusty click-and-wind as a young teenager.  I was very into photo-stories (side-eyes Jackie, Patches and Blue Jeans) but I’m now all about the digital age. 

The image I take says more about me and who I was and have become that the captured moment depicts.  People I’ve lost touch with, experiences and emotions I felt, pain and joy, all are there.

The advent of the camera-phone is a blessing and a curse.  I no longer take the time I did in ensuring the moment I click the button what I want to see is memorialised.  That click is not actually needed in digital photography.  The sound is so evocative to us it is part of the experience now.

I can take many pictures and edit them.  I no longer print them because I can save them to an x-drive.  I get a calendar made with photos from the previous year; there is still something about flipping through pages or seeing the printed image that has the tactile link a screen cannot deliver.

An image can change ideas, beliefs, states of mind, emotions.  It is propaganda, it is what the creator wants us to see.  Our reactions come from outside the experience of the creator.  The image is created with meaning, however frothy the intent might be, but the perception will never be exactly as intended. An image is so much more than what the eye immediately perceives.  It is a doorway to a personal journey which awakens all the senses.  The power of an image is great indeed.

*Interview with Brian Barnes, by The London Mural Society

Cancer Treatment in a Pandemic

I am about to start week 3 of the first cycle of my cancer treatment.  I am receiving immunotherapy, which is basically the same as chemotherapy except that for chemo you are bombarded with a treatment which is not targeted and destroys good and bad cells, whereas immunotherapy is more targeted, acting on the specific t- and b-cells which are causing my particular form of leukaemia.  Think more laser-sighted rifle than machine gun.  Think also that most of my blood consists of bad cells.  I am quite the internal battleground.

image description – a photograph of the author who has short red bobbed hair and is wearing a green t-shirt with cartoon images of female action heroes.  They are sitting in a hospital chair holding their left arm in front of them.  The forearm has a port inserted into the skin through which IV drugs can be transfused.

My treatment a complicated regime involving two different drugs, one infused through IV and one in tablet form.  The IV is for six months (cycles 1 to 6 inclusive) and the medication is for a year (end of cycle 1 to cycle 12 inclusive).  It involves up to six trips to and from the hospital in the first month, down to two a week from the third cycle; I have a calendar and am still confused.  After the 12^th cycle ends it is hoped my leukaemia will have improved to the point that I will once again enter the active monitoring (watch and wait) phase.  My cancer does not go into remission, it just resets and starts its journey again.

Treatment is made more dangerous for me, and more difficult to navigate, because of Covid.  More specifically, because of the confusing, selfish messaging that the United Kingdom has been given, together with the idea that somehow personal freedom to be all about oneself is more important than acknowledging and supporting the fact we live in communities and affect many people every day in our interactions, however small they may be.

Yesterday the UK government announced it is shortly going to be relaxing the rules that it had not been enforcing anyway, and it was hoped everything would be returning to “normal”.  This new Step 4 regime starts on 19^th July 2021 as England moves out of lockdown.  However, as the document itself says, the final decision will be made on 12^th July 2021, so that could all change again.  The devolved governments of Scotland, Northern Ireland and Wales will have their own procedures for dealing with the pandemic.

Consistent, clear, updating advice.  It must be nice to have a government that provides that… *side-eyes New Zealand*.  I strongly recommend you read the link to what will be expected of you, as it is now all down to personal responsibility and everyone caring about the other people with whom you share an environment.

Image of a medication pot split into seven separate days, further split into morning, afternoon and evening sections.  The pots are seven different colours, being left to right pink, orange, yellow, cream, blue, turquoise and purple.  The days of the week are listed above, and the weeks are also numbered.

At present I have absolutely no immune system whatsoever.  Nix, nada, zero, zip, zilch, nothing.  I have a mune system, being the exact inverse opposite of im.  I am literally an ex-vaxxer because it worked for two weeks and now treatment has removed all trace of antibody protection.  I’ve levelled up on medication pots and have yet to be prescribed the tablet section of my treatment.

I’ve come to terms with the fact I will be shielding indefinitely yet it is still possible I may be out mid-2022.  Who knows?  I am vulnerable to every infection now, and highly susceptible to sepsis should I get an infection.  The pandemic simply makes it easier for me to decide to stay inside.  It’s not really a choice, as I want to live.  If I didn’t, I wouldn’t be having my cancer treatment.  Unfortunately because I do want to live I have to spend a considerable time just existing.

Will society suddenly realise that it is not quite ready to ditch the masks?  That distancing is quite a good idea really?  That the NHS needs help so the fewer the infections, the better the healthcare system?  That their neighbour who they have never spoke too might still carry covid or become ill, and it only takes one cough/sneeze/touch-contact to hurt a vulnerable person?  That the children are being released into normality just before the school summer holidays so parents are likely to be stuck at home with potential biohazards running around the place?

At this point it doesn’t really matter if society does a complete 180 and starts taking it seriously; the fact is I can’t trust people to do so.  Like with any prejudice, because it is a prejudice to presume that those with disabilities/conditions should be treated differently/hidden away/excluded from access to living with self-determination, I don’t know who the person is who will hurt me until I have been hurt.

I am living through a pandemic and I am living through treatment for cancer.  Next year I plan on living just for me.  On the plus side, I have a treatment room with a view.

The view from my treatment chair being three windows, each with two panes of glass.  There are tall trees of all shapes and shades of green visible in the lower windows, and a bright blue sky filled with clouds visible in the upper windows.  Inside the room up against the windows are three metal trolleys on top of which are, from left to right, a small plastic cup with a jug of water, unknown medical machine, empty.

CLL – Countdown to Treatment Has Begun

I’ve informed all the family and friends I could get hold of so now it’s time to blog (which they have all be notified I will be doing the heck out of for the foreseeable so are prewarned).  It’s time to let both my readers know (presumptuous to assume they are not already informed via the above, I know).

My cancer (CLL) has reached the point where it has to be treated.  I’ve more symptoms and my blood counts are not going in the right way nor at the right speed.  So, on Wednesday 23^rd June in this Our Second Year of the Pandemic (or 2021 if you prefer) I will be commencing a 12-month course of treatment which, by the end of it, should have all my blood counts back to near-normal and other symptoms disappeared.

The initial appointment is on 16^th June (five days from writing this) at which all the consents will be signed and timings worked out, ready for the actual treatment to start on the aforementioned date.  I will be having a treatment known as Venetoclax + Obinutuzumab. I have yet to be able to pronounce the last one properly until the third attempt at trying.

Neither of these drugs are a form of chemotherapy, instead they are an immunotherapy.  However, in the way may treatment will be dispensed and in terms of potential side effects, it is pretty much the same thing.  As far as I can tell, the only difference is that the drugs I will be on are more targeted to specific cells whereas chemo is more of an untargeted treatment.  At present I am ignoring whatever potential side effects I might have, as I cannot know in advance what I will get so I am concentrating on what I do know will happen, not what might.

My first treatment day will involve a blood test at 8am, then four hours on an IV drip having Obinutuzumab transfused into me, then another blood test and hopefully home, unless signs indicate that I should be admitted overnight.  For the first week (cycle 1 is the first to fourth week, then cycle 2 all the way to cycle 12) I will get a transfusion the next day as well.

Weeks two and three, once a week infusion, with the possibility of an overnight hospital stay for each, won’t know until it happens. I’m assuming it won’t. I have been warned it will be intensely boring; thank goodness for e-books.

Week four, onto the Venetoclax which is an oral tablet medication given at an initially low milligram dosage and is then slowly raised over the next four weeks to a clinical dose.  This dose will then be a taken every day at the same time for a year.

In the meantime I will be having Obinutuzumab once a month from week five until week 26.  After that the Obinutuzumab will stop and I will be on Venetoclax without Obinutuzumab for the next 26 weeks.

Confused?  Now factor in blood tests once a week on different days to the treatment days, as well as on the treatment days, every week for a year.  It was a really daunting schedule to hear about and it didn’t really sink in at the last meeting with my consultant.  For the first month I may be going to hospital six times a week, two or three times in one day.

Luckily the hospital sent a full list of treatment days which I have now gone through and entered the exact dates upon.  Also, I highlighted hospital dates in yellow.  I may decorate it, I don’t know.   It’s going to run my life for a year, so I feel I should do something special with the seven pages of typed instructions!

I am also so lucky to have a partner whose workplace is incredibly supportive and who are doing their best to ensure Sooterkin™ can drive me to and from the hospital, and a wonderful friend Plaster™ who has offered their services when Sooterkin can’t make it.  There is hospital transport, MacMillan specialist counselling, nursing support, and aid with finances; there is so much out there that I will be accessing to help me and my support network get through these next few months.  I remain furloughed from work until the scheme ends in September, and as I cannot work from home (which is a whole other saga) I’m not sure what happens after that.  I’m concentrating on July and August before I get to September, so that can wait a bit.

It is one heck of a commitment treatment-wise, is the most intrusive, and demands the most initial time commitment for any first-line treatment that is offered for CLL.  It is very effective and will get me back to normal-as-I-ever-was, but still living with CLL.

CLL is incurable and we never enter a remission which may lead to an all-clear.  We only ever get our conditions back down to active monitoring (which is watch and wait, i.e. regular blood tests to see how you are going and check-ups with the specialist).  The important thing is that we can recover to a point where normal lives can be resumed and the merry-go-round begins again.

Unfortunately, because this is Our Second Year of the Pandemic, living with CLL has changed.  It is an immunity-squishing form of blood cancer and we remain clinically extremely vulnerable.  It’s why my treatment was put off since my bone marrow aspiration/biopsy and CT scan in January 2020, which thankfully is not being redone.  My worsening condition is why treatment is happening now.  I have to remain in shielding, even stricter than I have been, until at least January 2022.  It’s hard to know, probably longer, but it all depends on factors outside my control and in whom I do not have much faith (*coughUKGovernmentcough*) so there is no point in worrying about it yet.  Just like those potential side effects that I might or might not have.

Here is what I do know:

1. I’m starting treatment on 23^rd June 2021.
2. It’s time-consuming and I have the calendar to prove it!
3. This time next year we’ll be millionnaires Rodders I’ll be in much better health.

That’s all I really need to know, for now.  I’ll let what happens, happen and deal with it then.

Image description: close up of a hamster smiling with two thumbs up, with the words “practicing positive thinking” in white capital letters over the top and bottom of the image.

Roamin’ around Rome… The long avoided threequal.

Sooterkin explains just why our itinerary was loose.

In the words of Nevyn

I want to apologise for the delay of this posting… In my defence I have been distracted. I blame the gaming companies. Every year, around my spawning day, various software companies release products that may almost be specifically targeted towards me. Egotistical me?

Admittedly, I am easily distracted away from anything that could be interpreted as ‘work’. Of course, all that prevarication has meant that my memories have been diluted, edited and restructured. Unfortunately this means that this will be a slightly more condensed version of OurHero and LSA’s further adventures in Rome.

But where did we get to? Oh yeah. Here…

LSA in her rightful place. At the Temple of Venus.

Having done enough of the Fora and colosseum as they can in one day Our Adventurers attempt the following day to go to the highly recommended Crypto Balbi. Unfortunately it is entirely pre-booked tickets only. Frustratingly, the only…

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Chronic Pain and Feeling Down

There I was considering stopping blogging because it’s been a while, but 2022 has been a wild and fast ride so far (summary below)* and Sooterkin™ said something interesting so here I go**…

I have been suffering worse chronic pain recently than normal for me, necessitating painkillers (all hail cocodamol) and being unable to function with precise mental acuity.  Painkillers sometimes leave the brain fog behind or even make it worse, but the pain is gone so it’s all good.

I mean it when I say that. It is all good.  I am perfectly content.  I am content even in brain fog.  I am content even when is chronic pain.  I took painkillers because it is worse than normal, and that is an important distinction to bear in mind, because I have noticed when I post I am feeling pain and having to take painkillers, it is a statement of my physical body and not my mental or emotional one and many people mix up the two.  If I felt it, I would say it.

This is down to how we as individuals experience pain.  The difference between acute and chronic pain, which is one that is learned when one lives with chronic pain.  I have learned to recognise the difference, because otherwise I may not recognise acute pain and that can be dangerous. 

Chronic pain does not indicate a traumatic injury, acute pain does.  I learned to understand that movement will not cause further damage to my body, such as walking on a broken ankle would.  This then helps the anxiety and, in the long run (and in my case through pain management courses and both physical and mental therapy) being able to be content and in pain.  I gained an instinct so if you squint really hard it could be seen as a superpower.

People who don’t live with chronic pain don’t learn this.  There is no instinctual need. Acute pain causes anxiety and needs immediate treatment to avoid further damage to the body.  Chronic pain comes from already existing damage.  Living with chronic pain means learning to deal with it in every way.

I have immense gratitude towards those who can empathise and understand living with chronic pain.  Please know that it doesn’t mean I am suffering in any other way.

Have a picture of my cat.  You are welcome.

*2022 so far, having started the year without a job, on chemoimmunotherapy drugs, and still recovering from a ministroke.  Settlement from fracas of 2021 received in December.  Spoiler alert – it’s been fantastic!

April – started my own business, All Inclusive Wills.

May – I have my first social gathering, an outdoor picnic, since going into shielding (15^th March 2020) for my 50^th birthday; beloved friends and goddaughters are LFT’d and I’m masked. Shenanigans are had.

June – ended chemo treatment, medication down from 24 to 9 tablets a day.  Painkillers optional.

Also June – went to seen Queen with Adam Lambert at the O2 Arena, wore a rhinestone mask I made for my birthday.

July – business properly running, purpose regained.

August – started a monthly free clinic for legal advice (how to access, where to look etc, as well as my specialism) at social enterprise café The Jamii Project.

September – final Consultant visit for CLL with it now “undetectable in my blood stream”, so basically the best treatment result possible.

Also September – won Community Champion of the Year and was awarded Highly Commended Will Writer – Individual at the National Paralegal of the Year awards; attended Gala Awards in Birmingham.  Public outing number one out of shielding.

October – attended public bring & fix at TimeBank, my first time back to the TimeBank since shielding.  Made a t-shirt, gave advice, got a jumpsuit shortened by six inches.

November – went on a bucket-list fabulous holiday to Rome and Ostia for a week so officially out of shielding for good.

TL/DR – 2021 sucked so very hard, 2022 continues awesome.

Left to right – 1 – I win my award and a highly commended certificate at the National Paralegal Awards at a Gala Ceremony in Birmingham. 2 – Brian May and Roger Taylor of Queen on stage at the O2. 3 – I stand in front of the Trevi Fountain in Rome. Shielding done.

** he assumed I was having a down day because I was in chronic pain, as so many people do. It sparked thoughts.

Duo Cafelatte and a Permanent Grin

I went to Rome. Sooterkin has blogged about it. Brilliantly.

In the words of Nevyn

Finally, Our hardy adventurers are standing by a structure I spent a long time studying and historically deconstructing during my degree and it is making all my fizzy zones go into overdrive simultaneously. To be able to discern through personal observation the varying qualities of workmanship and stylistic methods visible rather than relying on a guided breakdown of two dimensional photographs is making Our Hero quite giddy. To share that knowledge with the ever patient, indulgent, and long-suffering LSA is worth all of the wrong turns, dodged vehicles, and over-heated heads.

In case you are wondering what I’m taking about, here’s a clue:

Yes! It’s the up-cycled Arch of Constantine.

What did you think, that our adventurers were going to just stumble off home after walking the entire perimeter of the Theatro de Flavian (do you know I think I’ve spelled at least two out of the last three words…

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Being Disabled By Society Sucks

(image description: Black triangle with a yellow circle inside, on which is black writing which says UK Disability History Month)

It’s been well over four months since I posted a blog.  That is the longest period I have gone without writing.  This is because I had what is called a T.I.A. (basically a mini-stroke) on 12^th September 2021, along with a bad seizure and several days in hospital under sedation.  My short-term memory is now a sieve, although should recover over time.  I forget words, cannot remember conversations and events, tire very easily after conversation, and have not been able to write.  For a while, I couldn’t read as I would forget what the previous pages had said.  Luckily, that ability has now come back to me.  I never lost the ability to type (all hail muscle memory!).

So now I have another physical problem which disables me within the social rules of UK society.  Having chemo for an incurable leukaemia during a pandemic, living with chronic pain from osteoarthritis, and living with epilepsy, JLL, PCOS, Depression and Sciatica wasn’t enough, clearly.  I needed to add Hypertension and a brain injury to the list.

I’ve been disabled according to the definition given by society since I was 11 years old, although due to luck more than anything was not visibly disabled until I was 31, and that is a real privilege I can assure you, both in terms of disability presentation and gender.  No-one is more invisible as a sexual and social being that a visibly disabled person, although I retain the privilege accorded my white skin tone, and still present as cisgender despite me recognising I am in fact gender fluid.

If you want to know more about living with disability both now and in the past, it is UK Disability History Month (I know, the image earlier was a bit of a hint!); click on the blue highlighted words in this paragraph to learn more.

Every condition that I am living with is shared by other people and could happen to anyone.  Some of the conditions have effects that are invisible.  That does not mean they are not disabling.

However, this pandemic has made it abundantly clear that the vast majority of people in society simply see disabled people as problems to be dealt with; as ‘other’.  I call bullshit.

Never forget that just because a person has a disability, or maybe several, or a condition or two that requires additional thought and action from those without those conditions, does not mean they are worth less that a person who lives without any disability or condition.  We are propagandised into believing a person’s value is tied to their financial status.  This is rubbish.  we would certainly notice the loss of cleaners and nurses, and dustbin operatives, far sooner than a lack of stockbrokers or lawyers, or even paralegals (of which I am one).  Yet the earnings would tell us otherwise.  Nor does the fact a person is living with a condition or disability prevent them from undertaking almost any job.  It varies according to the individual.  Unfortunately, the individual is seen as a physical entity over any other ‘qualification’ and that is where the ableism, the disability discrimination, comes in.

Society needs to change its thinking right now.  People are dying as a result of this abled-bodied privilege right now as a result of poverty and lack of compassion.  I see posts on social media proclaiming that we are all right because it is only the vulnerable who need to worry.  As one of the vulnerable, I am hurt beyond measure when I read that.  It’s okay because it is only people like me who are dying.

Refusing to be vaccinated or wear a mask is an individualistic way of living one’s life (I exclude those who cannot do either for their own medical reasons and do not need to know those reasons; I do need to know their status though as mine is “I will very probably die if I get Covid”).  I believe society must evolve into a socialistic model.  We need to always carry with us how our actions and words both affect and effect those around us.

I am disabled but it is society which is disabling me.  I would not wish anyone to go through the experiences I have had and will have in the future.  I hope that within my lifetime society evolves, and compassion becomes the priority instead of individual economic status when making choices in life.

(from https://www.inclusionlondon.org.uk, image description: white background. In the centre is a blue image of the planet earth on which is white writing which says “the problem is the disabling earth”. There are 8 blue arrows pointing away from the planet earth at the end of each of which is blue writing stating in turn “Badly Designed Buildings. Stairs not ramps, no lifts. Special Schools. Few sign language Interpreters. Discrimination. Inaccessible transport, no parking spaces. Isolated families. Few job prospects The picture has the title “The Social Model of Disability”. The picture has a blue rectangle at the bottom, with white writing on it stating “the social model of disability states that the oppression and exclusion (of) people with impairments is caused by the way society is run and organised”.)

Being disabled by society really sucks.

CLL – What is “A Normal Life” Anyway?

Wikipedia: the first case relating to the ongoing COVID-19 pandemic in London, England, was confirmed on 12 February 2020 in a woman who had recently arrived from China. By mid-March, there had been almost 500 confirmed cases in the city, and 23 deaths; a month later, the number of deaths had topped 4,000.

UK – 20^th May 2021: there have been 4,452,527 diagnoses and 127,694 people have died. 20,870,453 have received both vaccination doses.  It is not known how well the vaccines are performing yet.

It’s 21st May, 433 (inclusive) days since I started shielding and there is no end in sight based on one simple reason – I have blood cancer.  Mine is a chronic (meaning with me for life) rather than acute (meaning needing immediate treatment) form of blood cancer and will be with me until I die.  Indeed I may not die from the cancer (no-one knows nor can predict that); most CLL patients are diagnosed in their late 60s, I was 42.  Some people are younger than that.  Some live short lives, some 30 years plus. Chronic Lymphocytic Leukaemia is diagnosed with the words “this is the cancer you will live with, not die from” issuing from the specialists’ mouths.  My first consultant told me that I would live for up to ten years.  I have a different consultant now but hearing a potential 10-year life span as the average life span at the age of 42 is terrifying.  I learned not to read the statistics on CLL after a while.

Times have changed.  From being a cancer that you took calculated risks which were reasonably minimal with regard to ordinary infections, CLL has become one of the most dangerous to be living with in these pandemic times.  CLL means I have a very compromised immune system.

This is how I lived with CLL pre-pandemic:

• regular blood tests followed by scheduled visits to the Specialist at hospital,
• getting the annual flu jab and five-yearly pneumonia jab,
• contacting the specialist/GP upon feeling unwell in any way,
• regularly taking my temperature,
• checking lymph node size and shape,
• three hospitalisations so far, all with chest infections,
• awareness of hygiene knowing any infection through any type of cut could rapidly develop into sepsis,
• avoiding children who have been recently vaccinated with any ‘live’ virus (most of them are ‘live’ viruses-see image) for at least two weeks (no covid vaccine is ‘live’),
• avoiding anyone who is ill or thinks they might be,
• monitoring for other symptoms such as drenching night sweats, bone pain and fatigue,
• maintaining awareness of those around me at all times,
• I had to quit swimming (I was a 3-mile-a-weeker just a decade ago) as it gave me chest infections (see above).

I’ve also been told I am in imminent need of treatment since October 2019, but the pandemic meant many treatments were delayed and mine in particular as it was more dangerous for me in the hospital than to receive treatment for my cancer.  Visiting the hospital for consultations is too dangerous so being treated was and still is more so.  The vast majority of people with CLL have not been able to have meetings with their consultants face-to-face to monitor their conditions for over a year.

At every appointment for 18 months I have been told over the phone that treatment will be put it off a bit more as it still isn’t safe yet.  It’s 16 months since I had the preparatory bone marrow biopsy and aspiration and the CT scans on my lymph nodes and enlarged spleen.  Thankfully, staying shielding means I am not exposed to the everyday infections that most people wouldn’t even notice as their immune systems work.  Shielding has helped me postpone the treatment and maintain a level of health that without the pandemic I would not have had.  The irony is very much not lost on me.

My ongoing normal is to stay away from people.  I live in a city, so that means shielding, with any venture outside being an internal discussion weighing up risks to physical health against the benefit to mental health.  The risks, of course, keep changing.  We now have another variant, apparently even more dangerous than the previous variants.  Lockdown has ended but yet another wave is expected.  I’m safest indoors.

I’ve seen my parents once, because they shielded for days before I visited.  I’ve seen friends at a distance, because they take covid-19 tests before they see me.  I have very occasionally allowed risk to enter my home, prioritising my mental health and friends over my physical health and life.  I don’t see any friends that have children or are around children, or that aren’t tested, or that I have to travel to see, because I cannot guarantee they are safe for me to meet.  I have to rely on what people are telling me about their own days and the risks they may have taken in order to make choices about interacting that could, if I’m wrong, lead to infection and potential long-covid problems or death.

I’ve unshielded occasionally for the sake of my mental health.  Each time is a risk-assessment and trust exercise.  Shielding is strongly advised by government but is voluntary, and support for workers furloughed ends in September.  The pressures on me to unshield are immense, internally and externally.  I’m having to pay attention to statistics again.  My CLL is no longer one to live with, it is one that is preventing me from living in the way I used to.  My activism, volunteering, work, and social lives are now only available through a laptop screen.  I am privileged however to be able to shield; I have a supportive workplace, and supportive partner, family and friends.  I don’t live alone.

The reason I do not see an end to needing to shield is because, for me, nothing is changing.  COVID-19 is still around, there is another new variant, and the known risks have remained the same or worsened for people like me.  I used to think I wasn’t rare, that if I had this combination of conditions and pandemic and environmental risk, then so must many others.  I’ve come to realise I am the only person I actually know of still in the position of having to shield.  I’m a bit more original than I realised. CLL has changed my life in a way not even the specialists could see coming.  Living with CLL has been redefined and what constitutes my life has changed profoundly.  My new normal is very different to anyone else I know.  It’s a lonely position to be in, but thanks to friends and family and the world wide web (all hail Sir Tim Berners-Lee) at least I’m not alone.

Have some statistics as of 20^th May 2021, all part of evaluating my position and constantly updating:

Cases in [the borough in which I live] – source: https://coronavirus.data.gov.uk

1 confirmed case is someone who has tested positive for coronavirus.

8 new people had a confirmed positive test result reported on 19 May 2021.

Between 13 May 2021 and 19 May 2021, 61 people had a confirmed positive test result. This shows an increase of 48.8% compared to the previous 7 days.

Vaccinations in [my borough]

Vaccines are currently given in 2 doses, at least 21 days apart.

121,772 people had been given a first dose by the end of 18 May 2021.

61,251 people had been given a second dose by the end of 18 May 2021.

Healthcare in (my local) NHS Trust

Some people with coronavirus have to go into hospital.

0 people with coronavirus went into hospital on 9 May 2021.

Between 3 May 2021 and 9 May 2021, 6 went into hospital with coronavirus. This shows an increase of 200.0% compared to the previous 7 days.

There were 4 patients in hospital with coronavirus on 11 May 2021.

Statistics for clinically extremely vulnerable (CEV – that’s me) people will be released by the ONS (Office of National Statistics) on 8^th June 2021. This is all they can say at present:
Clinically extremely vulnerable – People who are identified as clinically extremely vulnerable (CEV) are at very high risk of severe illness from the coronavirus (COVID-19). Up to 16 February 2021, CEV people were identified either because of a pre-existing condition or based on the clinical judgement of their clinician or GP that they are at higher risk of serious illness if they catch COVID-19. From 16 February 2021, individuals can still be identified as CEV by these routes, but also by COVID-19 population risk assessment.

The most up-to-date but very small study from the United States (Sloan Kettering: Dr. Anthony Amato, et al, pub. 13 May 2021) – bold highlight by me:
“In this study, we found that only half of vaccinated patients with CLL develop detectable anti-SARS-CoV-2 S1/S2 antibodies. Furthermore, we found a significant difference between rates of detectable anti-SARS-CoV-2 S1/S2 antibodies between treatment-naïve patients (17/18, 94%) and those who had received CLL directed therapy (6/26, 23%). These striking findings suggest that vaccination in patients with CLL may not confer the efficacy that we expect in the general population, particularly in patients receiving CLL-directed therapy. … specific guidance for patients with CLL are warranted as the current Center for Disease Control and Prevention recommendations regarding relaxed personal protective equipment use when around other vaccinated people may not apply to this population [24]. Without consistent antibody responses, patients with CLL should continue to exercise extreme caution following vaccination until further data on clinical efficacy are available.”

Bye Bye Bike – The Dream is Over

Was it really only last August when I, in my already failing desire to get back to work amidst the sound and fury of whatever was happening on the outside because I had been shielding for seven months by then, bought this absolute beauty of a three-wheeled motorbike?

This pandemic means it is no longer safe for me to use public transport, because of my CLL I have to commute to work and it took two buses, or one bus and a train, to get there.  Alternate travel arrangements were required, and at the time although I was expecting the second lockdown I still wanted to plan for a possible return.  I sought a three-wheeler for extra stability as bouts of chronic pain are not predictable.  I spent many hours researching reviews, website reviews, gathering information and had actually looked at this type of bike six years earlier when the idea first came up.  I bought the Piaggio MP3 as it can be driven on a car licence, which I already had.  However, when it was delivered looking a bit different than the photo (actually an upgrade for the same price) I took one look at it and knew I needed bike lessons.  This gorgeous bike is to be ridden, not driven.

my and my bike, at time of writing…

I booked a class that stated it was for beginners and was run by professionals.  It certainly was the latter, but not the former.  We had an hour of road safety and were expected to be riding on the roads by lunchtime.  This was not indicated when I booked the lesson nor was it in the information online about the class.  It may have been set as I was the only beginner there, all the others were retaking their CBT.  It was clear when I walked in they weren’t happy a total noob was there (only woman too, as although I identify as gender fluid, this is not how I am perceived).  I was intimidated, nervous, and being repeatedly told that the use of the handlebars is intuitive.  After a brief “how to turn the bike on”, how to brake and how to turn (apparently, this will be intuitive too, just turn from the waist).  Guess what, neither was intuitive and I was unable to turn the tight circle they had laid out after 20 metres of straight track, and I crashed into the metal fence at 90 degrees, coming off the bike with my left leg under it and ripping the engine off the front of the bike.  Thank goodness I was very slow.

not my bike, but same make and model.

This was two hours into the day long lesson.  I was shaking and tearing up, and feeling the onset of great pain, and I felt humiliated. I was told by the course leader to go learn to ride a bicycle first before I came back.

I fully intended to book another course with another provider recommended to me by my friend Worksub (who will know why I’ve called her that but I don’t think she is one of my two readers).  I was not going to let that terrible experience stop me learning.  I’d always wanted to ride a bike, but when my Clone™ was learning at 18, I had only been seizure-free for six months, so by the time I could legally learn to drive I was already living in the Big Smoke away from home at Uni.  I didn’t learn to drive until I was in my 30s and that’s only because family keep moving far away from me (hmmm…).

But time moved on and winter came, which showed me very clearly how my body reacts to the cold and that the idea that I, a person with chronic fatigue, chronic pain, and immunosuppression combined, would be taking an unnecessary and unwise risk to ride a bike through London traffic even for just the three mile each way commute.  I cannot lift the bike if it falls.  I struggle to get it off the kickstand.  The weight of the safety gear I have is significant and could easily trigger pain.  I have to look at these potential problems and work out if there could be a balance or method put in place to enable safe riding.  I would not have know about these specifics if I had not bought the bike, all the safety gear and bike security, and tried a lesson.

This has been a very hard decision to come to, partly because it was a significant expense for which I received a lot of generous help, but mostly because I have always wanted a bike.  My Twinnie™ (aka Clone™) had one, my dad had one, my mum used to steal Clone’s so dad could teach her how to ride), I have friends who love the freedom that a bike or scooter can give them.  It would have given me freedom too, to leave my flat safely during this pandemic, and all the positive thinking and therapeutical practices are not going to stop the feeling that I’ve been inside for fourteen months and it is going to be many more months before I can be truly comfortable in situations where I may even just pass a stranger walking down the street.  Even longer if they aren’t wearing a mask.

I have to put the safety of myself and other road users first.  The bike must go and I shall then need to get a small, city-suitable car.  My environmental head is screaming at me, but that is the ableist in me shouting (I’m ingrained with it as much as anyone, despite my disabilities/conditions).  I never wanted to be a two-car household, but m’Sooterkin™ also has to drive as he works in the middle of nowhere.  I cannot for the sake of my health use public transport, I cannot because of my health safely ride a bicycle.  I’m left with the choice of never returning to my job or getting a car.  I’m going to take the purchase decision very slowly this time; I know I am in shielding for at least another two months.  On the plus side, I can already drive whatever I finally get!

The biker dream is not going to happen.  It’s another dream that needs to be laid to rest.  Sometimes dreams are outgrown and all the trying in the world simply isn’t going to work.  I know I’ve made the right decision and I’m choosing to believe that just means the right dream will find me another way.  Or maybe the dream is just being able to get back to work, however I manage to do it.